Making Sense of Autism, by Travis Thompson. Baltimore: Brookes, 2007
Making Sense of Autism belongs to a particular genre of books about autism, the earliest example of which was probably Lorna Wing's Autistic Children (1972). Making Sense of Autism is an autism “guidebook,” written by a professional for an audience of nonprofessionals. Its purpose is to explain and interpret the phenomenon of autism to the un- (or under-) initiated. Such books usually share certain characteristics. They generally make claims of legitimacy based both on the author's long experience and a presentation of scientific literature related to autism. These sorts of books typically include descriptions of behaviors common in autistic children and interpret these behaviors in mostly negative ways. The books define autism as a series of deficits, most frequently based on Wing's “triad” of deficits, with the assumption that if the missing characteristics could be supplied the person would become more like a normal person. Consequently, these books offer recommendations for education and “management” of autistic children that are focused on fixing what is considered broken, that is, making the child appear more like a nonautistic child in a variety of areas and at a variety of ages. Given the expected audience for such books, special attention is also frequently paid to the situation of the families of autistic children. Such books rarely, if ever, include serious attempts to present the points of view of people labeled autistic or their family members.
I tend to look at books in this genre with a measure of skepticism. I am the parent of a young man with an autism label, and my professional interests relate to the emerging field of disability studies. I have been especially intrigued by the way that people with cognitive differences are represented by different constituencies in this culture. In contrast to much of the dominant culture, a disability studies' perspective does not frame disability as a particular deficiency in a person's body or mind (i.e., a “clinical” perspective). Instead, problems experienced by people with disabilities are the result of their treatment and mistreatment, whether cruel or benevolent, within the larger culture. Thompson's book is an example of a benevolent, and very much exterior, representation of autism.
Although Thompson does not profess to have an insider's view, he does take pains to establish his authority to describe and explain autism. This is a common feature of disability guidebooks. Such claims are not only meant to reassure a general audience regarding the author's credentials. They also reveal professional fault lines by suggesting that a particular professional approach (in Thompson's case, a behaviorist approach) is superior to others. However, it is worth noting that competing professional representations generally make similar claims and share similar characteristics.
For example, in a table on pages 54–55, Thompson compares a variety of professional approaches, giving each a rating with regard to its supposed effectiveness at ameliorating “core autistic symptoms.” Not surprisingly, the approaches with the highest ratings are the most behaviorist ones. The assumptions underlying the idea of “effectiveness” include the idea that an approach is effective to the extent that it makes autistic people more “normal,” (i.e., more like nonautistic people) and that such normality can be quantified and measured. This framework is a clinical one, based on a medical model; note the use of medicalized language, such as symptoms. The approach treats autism as disease, and the unquestioned assumption is that cure is the most desirable outcome.
Whether behaviorist or not, most professional representations frame disabilities in general (and autism in particular) as a form of human insufficiency. Thompson is no exception. His way of “making sense of autism” includes describing the autistic child as being like a normal child that has been “broken” and requires “fixing”:
A child with an autism spectrum disorder (ASD) is like a mistakenly translated sonnet with muddled meter and an imperfectly rhyming final couplet. How do we return the sonnet's meter to the one its author had intended without the original as our guide? (p. 127)
Because autistic children are understood to be insufficient versions of “normal” children, autism is seen as a tragedy that strikes families. Thompson's assertion that, “[e]very parent hopes and expects that their newborn will be healthy, mentally capable, and able-bodied” (p. 60) suggests that children with autism are none of these.
The bulk of the book focuses on behaviorist interventions, starting with what Thompson calls intensive early behavioral therapy (IEBT), an approach based on applied behavioral analysis (ABA). Chapters follow the career of a child with an autism spectrum disorder (ASD). Thompson uses the technique of creating imaginary or composite scenarios that show the progression of this career. There is the child's first introduction to therapists, the working through of initial resistance, the increasing eye contact and communication over time, and the introduction into school. The book also includes “guidance,” often in the form of anecdotes and advice, regarding responding to difficult behavior, the use of various medicines, and the definitions of labels, such as OCD and ADHD, that are sometimes associated (or confused) with autism labels.
Making Sense of Autism is likely to be most positively received by behavioral psychologists, especially those with a behaviorist perspective. As the father of a young man labeled autistic, I felt patronized by the book and failed to find material that offered insight into how to cultivate my son's strengths or reduce others' misunderstandings of him. Naturally, both autistic children and their parents are vulnerable at times, but I reacted negatively to Thompson's confidence that he understands parents better than we do ourselves (e.g., consider the section on pages 189–193 under the heading, “Why Parents Use Ineffective Treatments”).
Much to his credit, Thompson often argues for caution with regard to responses to the unusual or difficult behavior that is frequently associated with children with the autism label. He suggests avoiding a punitive approach and makes some attempt to analyze difficult behavior from the child's point of view. For example, he writes, “Parents, teachers and therapists should try to avoid the trap of focusing exclusively on how to get rid of a problem behavior. Instead they will find it more helpful to ask, ‘Why is it necessary for him [sic] to display this problem behavior?’” (p. 146). However, when Thompson writes about responding to complex behavior, his purpose still appears to be about controlling, rather than empowering, the child: “One of the more effective ways to gain control over the behavior of a child with an ASD is often to relinquish some control over things that matter greatly to the child and are relatively unimportant to you” (p. 9).
Thompson also argues for caution when evaluating any clinical approach to autism, hammering this message home in a final chapter entitled, “Caveat Emptor.” The principle of caveat emptor suggests that consumers should evaluate claims with healthy skepticism and an awareness of who benefits from the claims. I would suggest that when reading guidebooks of this kind, caveat emptor is good advice indeed.